Something’s Missing

I caught up on my blog reading today after a week in which one of my sons needed a level of support beyond what is ‘normal’ even for our family. He continues to get the support he needs and the long weekend has offered the chance for a breather and some reading time.

The Autism Speaks video continues to generate discussion. Much of the response has been negative and with characterizations of the parents that included “whiny” and “selfish”. It’s been in these descriptions that I’ve noticed that something is missing. And before I go further, let me clarify that this post is about the video and the resulting discussion. It is not about Katherine McCarron’s mother.

The thing that’s been missing from the discussion is simple: compassion. Sure the video presented a view of parenting autistic children as particularly dismal. We observed the parents behaving in ways that seem very unsupportive of their children. Many have said that the parents need to stop whining and complaining and get over it because “that’s life.” I completely agree with the assessment that we need to take on life’s challenges rather than letting them get the best of us. However, we also need to recognize that life’s difficult times can include depression, loneliness, and feelings of helplessness that may even be called despair. It includes periods of frustrations, adjustments to those frustrations, and hopefully acceptance. Life dishes up these difficulties to all of us at different times, in different amounts, intermixed with the joy and the happiness. Its best not to judge but to count our blessings for being in a better place.

It seems reasonable that the producers of the video would seek out those parents who were at a low point in the cycle of ups and downs that life dishes out. Its those parents that would exhibit behavior that supports their message. Perhaps the parents were even encouraged to talk and behave in ways that were very different than they would off camera.

We know next to nothing about the parents in the videos other than they are struggling to deal with their child’s autism. My perspective of neurodiversity is that we need to allow room for those that are emotionally strained, people who pessimistic in their outlook, and even those that are whiny. The proper response is to be firm in our own convictions but also offer compassion, for both parent and child.

I know many parents of autistic children who have challenges far beyond mine. Some have spouses that are in denial and unsupportive. Some have families that lay the responsibility for the child’s differences at the parent’s feet. Some have doctors and teachers that tell parents that the problems are all in their head. Many have yet to find a network of people that offer support and are instead surrounded by blame and judgment.

Over time, I hope all parents can provide the love and support that their children need. I also hope we can find compassion for each other during the times that we struggle.

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6 Responses to Something’s Missing

  1. Amanda says:

    I don’t think that it’s a lack of compassion at all. I think it’s a lack of tolerance for blatantly destructive propaganda. A lot of people have said it would be different if this were merely private, but it is not merely private, it is a public video aimed to change the way people behave towards autistic people.

    I don’t think it’s fair at all to accuse people of lacking compassion just because they won’t put up with destructive propaganda.

  2. Kristina says:

    I’m glad you posted on the video after “the storm.” “Autism Every Day” has certainly aroused a lot of feelings and opinions–and I only hope (yet doubt) that Autism Speaks is listening.

    We need to make sure that they do.

  3. Mum Is Thinking says:

    Autism Speaks is asking for compassion for these parents with the aim of gaining money to fund their organisation. I do not think that is a good enough excuse if they ask it at the expense of the very people they claim to speak for. Even wearing my ‘caretaker’ hat, I find this unacceptable. In fact, wearing my ‘caretaker’ hat, I find it ESPECIALLY unacceptable, because it will be harmful to our children in the long run.

    Should we offer compassion to these parents, at the expense of all autistics, including our own children?

    I’ve lived through many of the same difficulties they talk about in this video, and I can tell you, I would NOT ask compassion at the expense of my childs dignity. I don’t think Autism Speaks should have that right either.

    I don’t think our children should pay the price for compassion to their caretakers. It’s as simple as that.

    But I still think your heart is in the right place. I guess we would have to agree to disagree on this one.

  4. Shawn says:

    @Mum is Thinking,

    I see your point on how Autism speaks is seeking compassion at the expense of autistics.

    Fortunately, we don’t have to be compassionate on their terms. We can dictate our own terms.

    The video obviously had an agenda to raise awareness and money. We need to be careful that we don’t allow the someone else’s agenda to dictate our behavior towards the people involved.

    For me the test is, how would I speak to one of the parents in the video if I met them tomorrow? I hope I would speak and act out of concern for the children and the family without regard to the agenda of the video and Autism Speaks. I think most of us would do the same but that hasn’t been reflected in the on-line dialogue.

  5. Yammt says:

    I find it difficult to feel upset with the video, as it represents what some parents of autism or other exceptional children may feel. Just as autism is a spectrum disorder, our ability to cope is also along a spectrum as their caregivers. I will not judge and add to their feelings of hopelessness or guilt.

  6. melanie says:

    I also could see good and bad points to the viseo, I could relate to the video as well, esp the running away segments. I think it is important to remember that autistic children are human dbeings thou, who have great days and crappy days too.

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